This blog site is a place for Anna Jaworski, author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation, and editor of The Heart of a Mother and The Heart of a Father, to keep readers updated on important news related to Baby Hearts Press and important information for the heart community. For more information about Baby Hearts Press, please visit us at http://www.babyheartspress.com.

Monday, August 5, 2013

Transferring Responsibility

Watching our children grow up can be challenging. It's scary to see them make mistakes but a good parent knows mistakes are part of growing up. Being the parent of a child with a congenital heart defect means watching our children make mistakes is even more challenging since some mistakes could be so costly. Not wanting to be a "helicopter parent" means letting go and transferring responsibility of care -- even if that means mistakes might be made.

I believed in letting natural consequences serve as "punishment" when my children made mistakes growing up as often as I could, but most of the mistakes my children made were minor. They weren't life-threatening. What would happen if I totally gave responsibility to Alex for his medical care? Would he be as vigilant as I was? Would all of the years of learning about his heart defect, his medications, possible side-effects . . . would it all be for nothing?

Training our heart children early is essential. Alex knew the name of his heart defect and the name of his surgery before he even really knew what they meant. He knew his medications. From an early age, I had him help me with his medicines. It was never up for discussion. He needed his medicines and I was lucky that he was very compliant in taking them, even when he didn't like them. I just acted quite matter-of-fact about them. Since both his father and I took different medications as well, I don't think Alex really gave them much thought. Plus, since Alex was 2 months old with his first surgery and 9 months old when he had his second surgery, he's taken medications every day of his life (that he remembers). Since I've written books for the heart world and given many speeches at a variety of heart events, Alex knew his story. But would Alex carry that with him and be the responsible adult I needed him to be?

When Alex came home from his first year of college I noticed that he had more medication left than he should have. He informed me that he hadn't remembered to take his medicine everyday but that he was good "about 80% of the time." Eighty percent of the time! I told him that he would have to tell his cardiologist that when he had his visit.

Since Alex is now 18, he could go to his cardiology appointments alone. It didn't surprise me when he decided he would do his appointments without me. He went to his first appointment -- a stress test -- and did very well. This was the first time for him to take a stress test and I was a little concerned about how he would do but, according to Alex, his cardiologist was pleased with how well he did.

Next came his echocardiogram. Alex has had so many "echoes" that I didn't worry about him going for this test. It's not uncommon for him to be so relaxed during this test that he dozes off. I had hoped he would have our favorite echo tech for the test, but he had someone new. He said it was uneventful.

Finally Alex went for his meeting with his cardiologist. Again, he wanted to go alone. Transferring responsibility is tough. I wanted to be at that meeting! I wanted to hear the doctor tell Alex he'd done a good job. I wanted to see the test results myself. I was used to recording and keeping track of everything but I let him go alone and I even left town! I spent the day with my sister out of town celebrating my birthday.

While I was out with my sister I received a call from the hospital. My heart raced when I recognized the number. Was Alex okay?

The person calling said she was scheduling Alex for his follow-up appointment in six months. She then went on to tell me that her son requested she call me because he didn't have his calendar with him. She immediately started praising Alex. She told me how Alex's doctor had raved about what a great patient he was and how he wished more of his patients were like Alex. I felt so proud of my son. According to this nurse, Alex had had a stellar appointment and Alex's doctor was very pleased with his progress.

Phew!

When I got home I asked Alex how his appointment went. He gave me the same details the nurse had given me and then he gave me the print outs his doctor had shared with him to put in his files. I told him what the nurse had said and he smiled. Then I asked him if he had told his doctor that he hadn't remembered his medications everyday. He said, "yes" and then told me that his doctor told him that if he forgot his medications in the evening, he should take them first thing in the morning.

Transferring responsibility can be difficult but it is so gratifying when it all works out well. I won't always be around Alex to make sure he does what he's supposed to do. I need to know that he can take care of himself. He showed me this summer that he could. I'm just thankful for the fact that Alex has so many people watching over him and for the fact that he wants to be healthy. The best thing that came out of this was seeing that all of the years of training had paid off. Alex could handle his exams and his appointment because he'd already done it over a hundred times before. He is growing in confidence and capability and I'm learning to let go and even to relax a little bit.

2 comments:

letting go is really hard. The first time my heart healthy daughter Allison was allowed to exclude me from her check up it was hard. But then you have to think to yourself about how much energy you have put into raising them and you have to let your efforts speak for themselves. I'm keeping my fingers crossed anyway. Great article Anna!